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My life with seizures

Very bad day so not able to type much. Will copy this summary I typed elsewhere instead:

Welcome to my life with a seizure disorder.

Dozens of seizures a day and being able to do nothing to stop them; relying on your partner to stop you auto-walking, falling, or being hit by cars when having a seizure; not remembering ANY of your day (not even things you did five minutes ago); and looking like a prat in front of complete strangers, so choosing to hide away inside.

Just tried to say goodbye to [my partner and our friend], and instead my mouth said “no fucking”…which was at least humorous, but y’know’ not exactly great XD

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No Mother’s Day for you

Anyone who has followed this blog for a while will know how my relationship with my parents upsets me, and how it always has.

My childhood was awful, and I’m confident a lot of their behaviours pushed me towards a fair chunk of my mental health issues now. Since leaving home at 18 they’ve been just as bad, but thankfully I don’t interact with them much anymore.

My parents entirely lack support for any of my issues.

It’s always me chasing after them to talk with them, making sure I phone on Mother’s Day, remember birthdays etc. They never get in touch with me to ask how I am, and for the longest time when I tried to talk about seizures I was met with silence or whistling as they watched TV. Insulting…

I am hugely pissed off right now because today is Mother’s Day.

I tried to call them first thing in the morning to wish my mum happy mother’s day. With having seizures I never know how my day’s gonna be, or how cognitive I will be in the evening, so I try do important things as soon as the day starts.

Both my calls went unanswered, so I waited until evening to get in touch again as I knew they’d have sunday lunch with my dad’s mum, and then go to my mum’s sister for a family meal in the evening to celebrate mother’s day. It’s been this way for years.

I sent my dad a message at 7pm asking when they’d be home so I could ring, and he said soon.

We exercised our dogs so they’d be tired for a call, and I shut all the curtains and sat under a blanket so my seizures would hopefully not make an appearance (light changes at dusk and the added brightness of lamps and screens are a huge trigger).

We’re waiting and waiting, doing nothing but hanging about so I can wish my mum happy mother’s day.

At 9.15pm I send my dad a message saying we have stuff to do now; my puppy on crate rest needs toileting and sorting, my dogs need letting out, feeding etc. I can’t sit under a fucking blanket any longer and my dogs can’t wait any longer…we waited two damn hours and he didn’t even let us know when he’d be ready -__-

He messaged back saying he was ‘just about to message us’ and ‘would ring in five minutes’.

Too late. Sick of your bullshit. Wish mum a happy mother’s day from me, I guess. Or not. I am beyond caring…

Someone please tell me how to cut ties with my parents, because I always go crawling back to them and I just want all this crap to stop.

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Full of seizure rage and the worst day ever

I’m so fucking pissed right now.

I have tried so many fucking things to try stop these seizures and they’re just as bad if not worse. You piece of shit CBD oil!! I’m doubling the dose, if this doesn’t help I’m pouring it down the bloody sink.

On top of that today we had to have my dog that was terminally ill PTS and my heart broke. I didn;’t even get to go to say bye as on th way to the vets I started having seizures, so thanks for that seizures.

And earlier in the day my assistance dog hurt her leg and was screaming in pain, we were stuck 30+ minutes from home and it was all shit. Thankfully we made it home, she hasn’t limped since, and after speaking with our vet she should be okay,.

So ready for this day to end I despise ABSOLUTELY DESPISE seizure rage. How is it possuible to feel this angry?!?!?!?!

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Lose control, gain control *ed trigs*

From the age of 16 – 21 I battled anorexia.

I first recovered at 20 years old, then had  a slip when I was 21. My partner helped me recover, and for several years after that I maintained a healthy weight. I was then put on a variety of psych meds and gained a lot of weight, and was never really able to lose all of it again…regardless my body image was much better and I was enjoying food, even if I did have periods where I despised the way I looked.

This past month has seen those ED thoughts raise their ugly heads, and I didn’t know why (after 6 years since my last blip) it had happened…I figured it out a few days ago, I think.

I started having a lot of seizures within the past 6 months, and I think the lack of control and helplessness has definitely pushed me towards ED thoughts (lots of control there!), and on top of that one of my dogs is very sick. Not only a huuuuge stressor, but my initial descent into disordered eating at the age of 12 (and my ‘blip’ at 21) were triggered by family members being terminally ill.

Having these thoughts fill my head again after so long is truly, truly bizarre…and, if I’m honest, extremely exciting.

I am thrilled about the control, the inevitable weight loss, and falling back into old habits is like putting on a comfortable old pair of shoes. It’s comforting, it really is.

I’m hugely massive now, so losing weight isn’t a concern, and I’ll never get anywhere near my lowest weight. I’d love to have that BMI of 15 again, but lets be honest it’s never going to happen.

Regardless I’m happy to be falling back into this, but I won’t let it get silly.

I’ve only acknowledged and acted on the the thoughts for four days so far, but I’ve been pleasantly surprised with how easy it has been so far. I’ve lost weight already and the comfort it’s brought has been great. It’s just…so so weird after not even thinking like this for many years.

 

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Seizures

I have had so many seizures today that I have absolutely zero memories of the day.

It’s after 6pm and I don’t remember any of it. I won’t remember writing this.

I have a few snapshot memories (not a technical term haha, just what I call them), which are still images, like photographs, of things that have happened today…and sometimes I will know what has happened without knowing / remembering. But yes, that is today.

On a walk earlier a car had its’ full beams on as it’s really foggy here. The headlights gave me a seizure.

I was having a seizure on / by the side of a road, and my boyfriend was having to manage our 13 week old puppy and my 5 month assistance dog in training, AND alert oncoming cars that I was there. All in the fog!!

And that is why I never ever go out on my own 😉

Ugh. I’ve been filling my seizure diary in for almost four weeks now! No patterns to identify.

seizurediary1

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Knots

My life is a tangle of various chronic illnesses.

A few weeks ago my seizures were atrocious, and my psychosis was incredibly difficult to live with. Then I had six days with minimal seizures, and during this time my mood was incredibly low and I spent a lot of time crying and hating myself.

Yesterday my seizures started up again. I had over a dozen yesterday, I had a few this morning and then starting around lunch time I’ve had absence seizures at fairly regular intervals for the past three hours.

In the background, as ever, there’s the insistent pressure of anxiety.

Ugh. Tired of this. Was really hoping my seizures would stay low until after Christmas, but it’s not looking that way. I’d love to have a nice seizure-free Christmas and be able to remember it!!